Development of the AASPIRE web accessibility guidelines for autistic web users

Websites figure predominantly in everyday life. However, many websites remain inaccessible to autistic people, and existing efforts to improve accessibility are in early stages, do not directly include autistic users in their development, or have not been empirically evaluated. The Academic Autism Spectrum Partnership in Research and Education (AASPIRE) used a community-based participatory research approach to create a website to improve health care access for autistic adults. We used the creation of that website as a “living laboratory” to develop the AASPIRE Web Accessibility Guidelines for Autistic Web Users. Our guidelines are grounded in accessibility theory, had autistic end-user involvement at all stages, and were empirically evaluated through a usability study and evaluation surveys. We incorporated what we learned into the design of the website, and compiled the accessibility information into a set of guidelines. The guidelines offer recommendations for increasing the physical, intellectual, and social acceptability of websites for use by autistic adults. In the evaluation of the website by 170 autistic end users, nearly all indicated it was easy to use (97%), easy to understand (95%), important (97%), and useful (96%). Ninety-two percent would recommend it to a friend, and 95% would recommend it to a health care provider. There were no significant associations between usability or understandability and education level, receipt of help using the site, browser type (e.g., IE or Safari), or device type (e.g., PC or tablet). We recommend using the guidelines to improve website accessibility for autistic Internet users

“Having all of your internal resources exhausted beyond measure and being left with no clean-up crew”: defining autistic burnout

Background: Although autistic adults often discuss experiencing ‘‘autistic burnout’’ and attribute serious negative outcomes to it, the concept is almost completely absent from the academic and clinical literature. Methods: We used a community-based participatory research approach to conduct a thematic analysis of 19 interviews and 19 public Internet sources to understand and characterize autistic burnout. Interview participants were autistic adults who identified as having been professionally diagnosed with an autism spectrum condition. We conducted a thematic analysis, using a hybrid inductive–deductive approach, at semantic and latent levels, through a critical paradigm. We addressed trustworthiness through multiple coders, peer debriefing, and examination of contradictions. Results: Autistic adults described the primary characteristics of autistic burnout as chronic exhaustion, loss of skills, and reduced tolerance to stimulus. They described burnout as happening because of life stressors that added to the cumulative load they experienced, and barriers to support that created an inability to obtain relief from the load. These pressures caused expectations to outweigh abilities resulting in autistic burnout. Autistic adults described negative impacts on their health, capacity for independent living, and quality of life, including suicidal behavior. They also discussed a lack of empathy from neurotypical people and described acceptance and social support, time off/reduced expectations, and doing things in an autistic way/unmasking as associated in their experiences with recovery from autistic burnout. Conclusions: Autistic burnout appears to be a phenomenon distinct from occupational burnout or clinical depression. Better understanding autistic burnout could lead to ways to recognize, relieve, or prevent it, including highlighting the potential dangers of teaching autistic people to mask or camouflage their autistic traits, and including burnout education in suicide prevention programs. These findings highlight the need to reduce discrimination and stigma related to autism and disability

Mindshift in autism: a call to professionals in research, clinical, and educational settings

Autistic people often have poor outcomes over the life course, including in health, education, employment, and community inclusion. Many professionals working with Autistic adults in research, clinical, and educational settings devote their careers to trying to improve such outcomes. However, we maintain that real progress cannot happen without a fundamental mindshift. The status quo for professionals is to view autism as an illness. Instead, the neurodiversity movement encourages us to value and embrace autism as an aspect of human diversity and asks us to view Autistic people as a marginalized group that experiences significant disparities. While some professionals may be adopting language and concepts from the neurodiversity movement, we argue that making this mindshift fundamentally changes our practice across research, clinical, and educational settings. In this perspective, we call on professionals to embrace this mindshift to reduce discrimination and stigma, halt the spread of harmful ideologies, and help Autistic adults live fulfilling lives

Intersections of Critical Systems Thinking and Community Based Participatory Research: A Learning Organization Example with the Autistic Community

Critical systems thinking (CST) and community based participatory research (CBPR) are distinct approaches to inquiry which share a primary commitment to holism and human emancipation, as well as common grounding in critical theory and emancipatory and pragmatic philosophy. This paper explores their intersections and complements on a historical, philosophical, and theoretical level, and then proposes a hybrid approach achieved by applying CBPR’s principles and considerations for operationalizing emancipatory practice to traditional systems thinking frameworks and practices. This hybrid approach is illustrated in practice with examples drawn from of the implementation of the learning organization model in an action research setting with the Autistic community. Our experience of being able to actively attend to, and continuously equalize, power relations within an organizational framework that otherwise has great potential for reinforcing power inequity suggests CBPR’s principles and considerations for operationalizing emancipatory practice could be useful in CST settings, and CST’s vocabulary, methods, and clarity around systems thinking concepts could be valuable to CBPR practitioners

Reflections of a Community-based Participatory Researcher From the Intersection of Disability Advocacy, Engineering, and the Academy

This article uses an evocative autoethnographic approach to explore the experience of being an insider-researcher in a community-based participatory research setting. Taking a holistic perspective and using the form of narrative story-telling, I examine the dynamics between the typically marginalizing (but sometimes empowering) experience of being an autistic woman and the typically privileging (but sometimes oppressive) experience of being an engineering professional, during a time of career upheaval. Themes of motivations and mentors, adversity from social services and the academy, belonging, the slipperiness of intersectional positioning, feedback cycles of opportunity, dichotomies of competence and inadequacy, heightened stakes, and power and resistance are explored through the narrative. While primarily leaving the narrative to speak for itself per the qualitative approach taken, the article concludes with a discussion of how the personal experiences described relate both to the broader work of insider-researchers within disability-related fields, and to misconceptions about self-reflection and capacity for story-telling in individuals on the autism spectrum

Mitigating Early Loss of Community Participation in Early Psychosis Services: State of the Science

In the early stages of treatment for psychosis, community engagement and social networks are threatened through a combination of symptomology and negative messages and reactions from the environment which may result in internalized stigma, disempowerment, and prolonged isolation. While treatment programs attempt to mitigate these factors, ambivalence toward treatment and the basic concept of psychosis, along with difficulty engaging in conversation, make initial engagement more difficult. Self-determination theory and growing recovery literature point to the importance of maintaining a sense of community relatedness and connection, and developing a sense of agency and competence as important to active recovery and retention of community participation. Emerging relevant interventions which may help foster these important underpinnings of forward movement include psychoeducation, peer-developed and delivered messaging, and easily accessible internet-based content. Interventions like EASA Connections that are designed based on this emerging research, and further include intervention recipients as co-creators in intervention development, may help increase participation in early psychosis treatment and retention of community participation over time, leading to better overall life outcomes

Community-Based Participatory Research to Improve Alumni Transition from an Intensive Research Training Program for Historically Underrepresented Undergraduates

Various initiatives for undergraduates from historically underrepresented backgrounds attempt to address disparities in the completion of science, technology, engineering, mathematics (STEM) degrees and the pursuit of careers in scientific research. Intensive research training programs for historically underrepresented undergraduates may include multiple components, such as authentic research experiences, advising and mentoring, supplemental curriculum, and financial assistance. Following comprehensive support during program participation, the post-program transition may present a vulnerable period in students\u27 career trajectories. This study used a community-based participatory research (CBPR) approach to investigate the experiences of students completing an intensive research training program to understand and develop recommendations for the post-program transition process. As a team of program alumni, academic researchers, and program staff, we developed, conducted, and analyzed semi-structured, open-ended interviews of recent program alumni and students approaching program completion (n=11; 55% female, 55% non-White). Applying thematic analysis at semantic and latent levels through a critical paradigm revealed the transition as a bittersweet experience, with feelings of pride and accomplishment mixed with sadness and anxiety. Findings also suggested the transition is described as a narrative influenced by preceding program experiences and adaptations. Financial concerns were prominent, and specific barriers and facilitators of successful transition included: aligned mentoring, negotiation of continued research employment, consideration of culture, planning for next steps, and engagement with the scholar community. Collaboratively, we developed recommendations for program improvements potentially relevant to similarly intensive STEM diversity programs. We also highlight the value of a CBPR approach that includes students equitably as co-researchers in program research and evaluation